Sherrill Mom raises autism awareness through blog

SHERRILL -- Diane Thurston Brown has found an outlet for her experiences raising her children -- two of whom have autism -- that is educational, moving, and entertaining for others while being personally therapeutic for herself at the same time.

Since April 2012, she has written an Internet blog titled "No Fear. May Flee" that tells the trials and tribulations of her life with her husband Eric Brown and their children Connor, 17, Spencer, 15, Alexander, 12, and Maya, 9. Brown said she was inspired by classes she was taking at the Downtown Writer's Center in Syracuse to write down her stories, feeling she had much to share with her readers.

"I'm the mother of four children, two of them have autism. I have no answers, only experiences," Brown says in the introduction to her blog. "Some are admittedly tragic while others are quite amusing. I would not change any of them. My hope is that readers will see a bit of themselves in my successes and failures as a parent and find their own inspiration."

Brown, a Vernon-Verona-Sherrill Central School class of 1988 graduate, met her husband to be, a native of Constableville, N.Y., in 1991 when they both worked at the Ruby Tuesdays restaurant in Utica. They married in 1993 and Connor was born in 1995. They moved to their home on Kinsley Street in Sherrill in 2000.

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When Connor was a baby, he was colicky and had acid reflux concerns, but other than that Brown said he met all of the major baby developmental milestones early. He walked at nine months, and developed language early on, although he never quite mastered putting words into sentences. But she said they noticed odd withdrawals from physical contact almost immediately.

In her "North Wind" inaugural blog entry of April 21, 2012, Brown recalled in poetic prose, written like a note to herself, the arrival home from the hospital with her firstborn son.

"When you come home, both of you begin to cry. When you breastfeed, he pulls away, arching like a cat and screaming. Your husband makes the necessary phone calls. Someone with experience is needed because you both are beginning to feel the nagging fear of inadequacy that is invading your souls like a cancer. Grandmothers and sisters smile smugly and assure you that all babies cry and soon settle into predictable rhythms of wakefulness and sleep. No one speaks of it, but everyone knows that you, the mother, are the problem. They say you read too many parenting books. You know they mean you are too rigid and intellectual. You find the advice from these women not only hurtful, but ineffective. You cease asking for aid and advice. You begin to erect the walls which you will learn to parent behind. For the sake of this perfect little being your heart explodes with love for, you will learn to create your own version of normal. Somehow you will learn to be worthy to be the mother of this boy you know you do not deserve.

"Your hands are trembling as you light the candle on your son's first birthday cake. Connor is screaming and someone is leading him back to you, his mother, to provide solace in the sea of chaos created by so many visitors. You abandon the cake to pick him up. Once in your arms nothing changes, so you and your husband take him to his bedroom to continue his tantrum in private. Truthfully, you are embarrassed that after one year of motherhood, you have not yet mastered the art of comforting your son."

She continues her entry through the arrival of baby Spencer some 18 months after his older brother -- the defining moment when in comparing their two sons they really knew something was going on with Connor. Although he was developing well physically, Connor was very temperamental and never seemed interested in playing with anyone or showing affection, even to his parents. He was finally evaluated at the age of 3, following a very slow-moving process that was the norm in those days.

Connor was diagnosed with autism.

"Spencer arrives less than two years after his brother. Your second son is a rule follower even before becoming part of your world. This time when you succumb to the process of labor, the cooperative rhythm between mother and child seems effortless. He slips out of your body, into your arms, into your life. He stops crying when you hold him. He looks into your eyes.

"The realization that something is not right with Connor's development is more difficult than blaming yourself. Another variable of guilt is added to your equation of motherhood as you calculate these thoughts at unpredictable moments. You try not to compare your two precious boys, but the truth you try to suppress is too evident. Maybe this is not your fault. You do some amateur research. You learn to know, but no one yet believes you.

"You finally convince your pediatrician that Connor may have autism and six months are survived waiting for the appointment with the specialist in Syracuse. A three hour evaluation results in a heavy pile of paperwork resting on your lap as you crawl along snowy streets in the family Jeep to go home where everything will change, but nothing will be different. Only the top sheet with the diagnosis "autism" has any real value. Though you have always taken pleasure in being right, the one to first solve the puzzle, this time you wish you had been wrong. This is not the future you envisioned for your beautiful prince. The child of your imagination is dead."

Brown admits some pretty dreadful and even suicidal thoughts, but says she doesn't act on them, only retreating further inside of herself and her sadness. But there is a light in her darkness ... maybe it's the practice of yoga, and maybe it's the falling to rock bottom with upwards the only way to go. She realizes there is much to be thankful for with her kids, and consoles herself.

"Your four children are healthy and beautiful. Each is equally fantastic and ridden with fault. They all need you. You are learning that things can be right and wrong simultaneously. It is possible to feel it all, and so preferable to feeling nothing. You are the mother of Vikings, great and terrible. The north wind that created you only serves to make you stronger."

Connor joined a special pre-school program and continued to live at home -- at one point with enough security on windows and doors to rival Fort Knox, Brown quipped -- until he grew stronger than his mother. Even before his teenage years he outweighed her and his uncontrolled temper sometimes led to violent flare ups creating a domestic violence situation in their home, leaving his mom bruised and missing the hair he pulled out. But even when Connor would lash out, once he calmed down he always felt sincere regret for any harm he caused, Brown said.

One day when he was 13, Connor attacked his mother, and Spencer, then only 11, went to get their father to stop him. That was a turning point in their lives together.

It was one of the hardest choices of their lives -- lives that had seen many hard choices to that point -- but they decided for the safety of everyone, Connor included, he would go to live at the Tradewinds Educational Center in Rome.

"It wasn't fair to anyone to go on like that," Brown said. "He doesn't do it on purpose, nor does he understand what he's doing. He just couldn't be managed in our home but he's very happy there and has shown so much accomplishment since then."

They still visit him on weekends, evenings, and every day when he's not in school. Brown said Connor prefers they come to visit him at his own house. He lives in a home with six other young persons, in an atmosphere like a college campus. Xander also goes to classes there, but because of his easy-going nature, they don't expect he'll have to move in.

Connor's interests include drawing and painting, and building things, his mom said. He is also very self-sufficient, and Brown said she thinks if there is a world apocalypse and Connor is the only one left alive, he will be able to go out in the woods and live on his own without any problem.

Spencer is a typical teen, with an interest in listening to music and making his own as a drummer and guitarist and occasionally playing keyboards as well.

He is a 10th grader at VVS, an avid snowboarder, and likes spending a lot of time out of the home with his friends. Brown said that's OK with them because that means he is being social and gregarious.

Alexander, nicknamed Xander, is totally non-verbal, yet Brown said he understands everything that is going on around him. To prove this, he communicates using an iPad specially programmed with pictures he presses to sound the words he wants to say. The household with Xander living there is rather unique, as exemplified in Brown's blog posting "Xander's Rules" on May 17, 2012.

She describes their household as they strive to make it comfortable for their son and the constant and uncontrollable overstimulated surges of data coming into his brain ...

"Dishwashers and vacuums may only run during school hours. If you are feeling brave, dishwashers can be run after 11 p.m. This is not true for vacuuming. You must check the refrigerator frequently to make sure the controls have not been covertly turned off. Breathe deeply. Always be sure you have a container filled with rice, oats, or dry beans. They may cause messes on the floor, but remember the rules on vacuum use. Frequently check your supply of diapers and disposable wipes. You will go through them faster than you anticipate. Don't forget to buy the adult size because the baby ones are no longer sufficient. When you manage to go to a store, always pick up AA batteries as well as chicken nuggets and Goldfish Crackers. Listen for doors opening and install bars on second floor windows. You should be very aware that they can be fallen from. The electric toothbrush, bathroom fan, and kitchen exhaust follow the same rules as vacuum and dishwasher use. Never raise your voice because it is not necessary and will cause unintended crying. Calmly assert your point when you need to and ignore the tantrum which may result.

"Sleep when you can because it can not be guaranteed in the typical time frame. The batteries you constantly buy power the toys which make noise at three in the morning. Do laundry several times a day. If favored articles of clothing and his favorite blanket are not available, sensory meltdowns may ensue. It is okay to wear swim trunks under jeans. Flapping and spinning are entrancing. Accept it. Put five towels around the bathtub because a flood will cause the downstairs ceiling to stain. Baths may be needed several times a day. Towels can be washed with favorite clothes for the sake of efficiency. When pinched or bitten, show no reaction. Remember how much worse it could be. Don't forget the other children. They have homework, appointments, and activities. Take time to talk to them about their day. Don't tell them about yours. Some family members never come to birthday or Christmas parties and could care less that they are missed. Tell all your children to not take it personally even though you do in silence.

"When scheduled help comes for a few hours a week, take a nap. Remember the noisy toys in the middle of the night. If you are feeling particularly energetic, take the other kids to the park, read a story, or help with homework. Attempt to feel normal if you can imagine what it would be like. Draw, listen to music, write and create. Learn to accept the serenity of repetition. Breathe deeply. Always be ready to slow down and take kisses when offered. He prefers elbows and necks. Look into his eyes which change colors like storm clouds. Tell him you are proud of him and know he thinks great thoughts without saying a word. It makes everything worth it."

Brown lists some of the new-found abilities she feels she has gained thanks to raising Connor and Xander in her blog post, "Useful, Yet Unintended, Skills I Have Acquired From Parenting Children With Autism" on July 19, 2012:

"Extensive hip flexibility from years of vaulting over baby gates.

The ability to repair holes in sheet-rock flawlessly with plaster and sandpaper.

Knowing it is more fun to play with rice and beans than to cook them.

Memorization of every glass repair shop's phone number within a sixty mile radius.

Being able to choose the best stuffed cats by holding them by the neck and shaking before purchasing. To see if they feel right.

An uncanny ability to decipher the source of a noise from great distance.

Possession of a highly trained limbic system acquired over nearly two decades of daily training. Go ahead. Try to startle me.

A mastery of skepticism.

The joy of acceptance."

Xander's iPad might enable him to communicate with the family, telling them where he wants to go, when he feels sick, or that he misses his grandma. It also has had the occasion to make them a bit apprehensive, like the time he started calling for help -- on the way into Canada. Brown's Dec. 9. 2012 entry "Crossing the Border" recalled the scare:

"Xander used his iPad for hours on the way to Canada. We were pleased that he was occupied. His Great Wolf Lodge map had disappeared into particulate after a year of companionship. The day had arrived for our annual Thanksgiving vacation visit and he was pumped. The slides and water sprays awaited. The rest of us talked and listened to music. As we approached the border, I became aware of Xander playing with the speech app on his iPad at a volume slightly above the predominant noise level in the van.

"'My name is Alexander. I live at 238 Kinsley Street. I need help. I need help. My phone number is...' I reached behind me and took the iPad away. The situation was potentially awkward.

The woman working at the border took her job seriously. She surveyed us through mirrored sunglasses and asked for identification. I presented passports and birth certificates. The chihuahua knew to remain silent, hiding under a winter coat in the back seat.

"She asked us our destination. Easy. Then she asked us if we had weapons, pepper spray, or narcotics. I am a lousy liar and often a poor planner. My eyes darted to my pepper spray on the key chain, the jack-knife in the dash, and realized I had a left over prescription for Vicodin in the suitcase. I stammered that I had none of those things while avoiding eye contact with her intimidating glasses. She eyed me with suspicion. Xander began to yell with his artificial voice out of reach. She questioned my hesitation, but let us pass. I imagined her mentally categorizing us as 'Crazy But Harmless.' I respected the accuracy of her judgment."

Xander likes electronics and swimming, and being in their back yard, a safe haven surrounded by a six foot fence because he likes to "wander" when he gets the chance.

Maya is a third grader at E. A. McAllister Elementary School in Sherrill, an avid dancer and level 3 ballerina who has a busy schedule sometimes with three dance lessons in a day. She said her life with her brothers is "sometimes fun, sometimes hard."

She also enjoys drawing and writing, and even has her own entry on the blog, titled "The Princess." Posted on July 11, 2012, it was written in memory of Lauren Belius, one of her best friends in Sherrill who was murdered in 2011, and Stella, one of the horses she used to ride with her brother at the Root Farm, an equine therapy facility in Verona.

Eric Brown is the chief technology officer of Mozzo Analytics, a company focusing on e-discovery, and the owner of Zengo Technologies, specializing in computer language processing.

Brown said her long-term aspirations are to write a book of their experiences. The "Vacation" blog entry from Feb. 23, 2013 concludes:

"It's time for a book deal. Or a reality show. We are crazier than anything on cable."

She hopes her blog will help others see and understand people with autism better, and noted that much has already changed in the way people deal with those who have autism since the early days of Connor's diagnosis.

"Understanding has really come a long way since then," she said. "Back then he was either seen as a bad kid or I was a bad mother, or both. Now people have a lot more understanding about what is going on and that is only going to keep growing in the future."

To follow Brown's accounts of the family's continuing adventures, log on to: